The Changing Definition of Autism

What’s in a definition? Everything when it comes to a diagnosis of autism.

A recent debate among mental health professionals, families and disability advocates is flaming passions about what it means to be an individual with autism. The American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders (D.S.M.), the standard reference for mental health professionals, is in the process of being updated. The APA, which defines autism, is proposing a new and more restrictive criterion for the disorder. That process, and the potential for a narrowed definition, is pitting families and advocates against the experts who traditionally work with them.

During the period of public comment, experts and parents revealed high levels of concern about the new definition, including that some children may not exhibit all of the behavioral and social interaction deficits necessary to meet the new standards. The intensity of the debate is indicative of the level of emotion surrounding the need to ensure that every individual has access to the supports and services he or she need to become successful. Underlying these concerns are worries by parents that their children will not be deemed autistic, and therefore will be ineligible for the specific services that can help ensure future success. What this means: Parents may be forced to emphasize the functional limitations of their child’s particular behaviors in order to access services and supports.

While there has been an abundance of media coverage detailing the concerns of parents, numerous articles explaining the concerns of mental health professionals, few describing the implications to youth. Recently Temple Grandin shared her concerns about the “downside of Autism Awareness.” In an article published earlier this month on Salon.com, she says, “I visit people in [autism] meetings, and a 9-year-old will come up and want to talk about his autism. I’d rather talk about his science project. You get fixated on your favorite thing as a kid, and now kids are getting fixated on autism instead of dogs or medieval knights. I’d rather get them to fixate on that something that could give them a career.”

Further, what impacts might a continued focus on functional limitations have on the expectations that are so critical to later success? What message do we send to youth with autism when we are forced to focus not on what they can do, but on what they struggle to do?

In the past few decades, a number of strategies have been identified that enable individuals with disabilities to obtain and maintain competitive employment. One such strategy is customized employment, which pairs an individual’s strengths, skills and interests with an employers needs in the workplace.

As the debate rages on, I hope that the conversations broaden to include a focus – beyond the label – on what steps can be taken now to prepare youth for future self sufficiency no matter if they are on or off the spectrum.

Taryn Williams is a policy advisor with the Youth Team at the U.S. Department of Labor’s Office of Disability Employment Policy. In addition to working closely with her team to change the world, she loves data, debate and all things fuchsia.